Saturday, August 18, 2012

Does she have Mito, or doesn't she? According to the "Bernier Criteria," a scaling system based on evidence such as clinical and visible symptoms, Queen Teen does have Mitochondrial disease. In fact, the Bernier Criteria upgraded her from "probable" to "definite." But we still don't have a specific diagnosis of the type of Mitochondrial disease she has. In an effort to maximize possible treatments, we decided to have her undergo a muscle biopsy. The biopsy would show if her muscles have "ragged red fibers." If so, then she definitely has Mitochondrial disease. If not... well... she still has Mito, but we will be no closer to understanding the type of Mito she has.

On Thursday, we drove to Stanford again, this time with her Aunt Mimi and best friend/cousin, Mae-Mae. The four of us had a wonderful time exploring the Stanford mall, where Mae-Mae introduced Queen Teen to the joy that is Ambercrombie and Fitch. We stayed in a nice hotel near the hospital where we ate dinner by the pool (which wasn't very good, but it was a lovely setting and our room was just three floors away). Queen Teen was ecstatic to have her best friend so close. Occasionally she'd reach out to hold Mae-Mae's hand and Mae-Mae would hug her or help her with a drink or find a book. Aunt Mimi was an incredible support for me, reminding me of details the doctors had said and finding my purse when I couldn't see it 6 inches from my ankle . Thursday evening I took a break and had a glass of wine by the turquoise pool, comforted by the fact that Aunt Mimi and Mae-Mae were there helping Queen Teen.

Friday was the actual procedure. We all woke up at 5 AM, scooped up Queen Teen, and then drove one mile to the hospital where we rolled her in her wheelchair to the Surgery Center. Queen Teen was tearful and frightened, but every time Mae-Mae held her hand or smiled at her, Queen Teen smiled back. Unfortunately they wouldn't let Mae-Mae into the pre-op area because she's under 18. But Aunt Mimi came, helping me stay strong so I could help Queen Teen stay calm.

The last time we were at the Surgery Center, Queen Teen fought and cried so hard that one of the nurses had to leave the room in tears. Two years later, there was no screaming. We took it very slow; the nurse had me take the lead on showing Queen Teen what was happening. The Resident (who was cute!), interviewed me from the doorway and later had me put the numbing cream on Queen Teen so she wouldn't be frightened by a stranger doing it. Queen Teen took the medicine the Resident gave her and in about ten minutes was stoned enough to lie back and relax. The Resident and nurses took her to surgery without me having to hold her hand the whole time. There was no fighting.

She's really grown up; at 17 she can understand what is happening a little more and can calm herself down when she's panicking. The staff at Lucille Packard Stanford are wonderful supporting kids with Special Needs. I'm sure we upset their schedule, but they didn't rush us. Slowly, we got Queen Teen ready, and she went into surgery without tears.

I waited in the cafeteria with Aunt Mimi and Mae-Mae, drinking decent coffee and fighting the desire to find my child. I hate waiting like that. My child is in a room full of strangers, completely helpless, and I'm just trusting these people not to hurt her. I do trust them, though. Lucille Packard is an amazing hospital. Regardless, that hour was horrible and I am so thankful that I had the support of family with me.

And then, a wonderful thing happened. Nurse Sarah who used to work with Queen Teen when she saw Doctor Sanger, walked into the room and gave me a big hug. She was so positive and happy to see me, my fear disappeared. We chatted about Queen Teen and the biopsy, how well she's doing despite her illness, and what Nurse Sarah is doing now that Dr. Sanger left Stanford. So many people have worked so hard to help Queen Teen, and Nurse Sarah is one of the best. We really miss her.

Finally the procedure was over and the surgeon came out to see us. She did great and was in recovery. Aunt Mimi and I went to post-op to be there when Queen Teen woke up. However, Queen Teen decided she wanted to stay asleep for another hour. I can't blame her; she was exhausted, overwhelmed, and after 15 hours of fasting, out of fuel. When I first took her hand she opened her eyes and then kissed me. After that, she went back to sleep. I tickled, stroked, kissed and massaged her, but she refused to wake up. The nurse just shrugged. "It happens. Her body really likes the medication." Eventually Queen Teen woke up enough to sit up and drink some juice. Once that happened, the nurses let her go, but Queen Teen slept almost the entire three hour ride home.

Rick was waiting for us when we got home. Aunt Mimi and Mae-Mae helped us unload the car and get Queen Teen settled, then they drove the hour to their own house. Again, I cannot express how thankful I am to that they were there. I told Mae-Mae that she's coming again next time Queen Teen has a procedure.

"I don't care if you have school. You're going."

She smiled and shrugged. "No problem."

Now we wait for results. The biopsy shouldn't take too long, but the skin cells will take longer. Hopefully, we hear something on Monday.

My daughter was born with visual, hearing, and motor impairments, so learning to walk was a difficult task. She used to fall down all the time! We started calling these falls a "Gravity Check," which made her laugh, get up off the floor, and try again.

Her Royal Highness, Queen Teen

This is Queen Teen, age 15. The little girl jumping on the bed is Queen Teen, age 4

About Me

Playwright, author, gardener, Super Mom, Johnny Depp fan and struggling Buddhist. Seriously, I really don't need to reach enlightenment in this life-time, so could you back off a little on the dharma lessons?